Wednesday, December 29, 2010

I have been absent online however not absent in my writing. I have many things I am intending on posting in the near future. I thought I would post this now, since it has been so long since I have added an entry. I am upset with myself for not dating this. I believe it was written during early November of this year. I wrote it while having lunch by myself at Panera Bread.

Too tired to return to my car. Nostalgic. Missing simple times. Being ten years old, sitting in my grandmother's kitchen. When hand written letters were delivered with a stamp and by real people. Before I knew of such things as war. Believing that playing outside with my cousins, Josh and Seth, justified all reasoning for why I existed. Watching the sun stretch her beautiful arms over the fields behind my house while softly kissing my nose and leaving golden freckles as proof, her fingerprint, that she had once been there. That I too, was once young and happy, and most of all, healthy. A time when worries flew past me and cares swam over my head. Remembering the smell of fresh hay at the barn. The way I tropped through the mud behind my father across the ground, my three steps to keep up with his one. The excitement over a new pencil box and crayons for school. These are the things my dreams are made of as I sit here in a Panera Bread on a Wednesday afternoon. These words are peaceful and real. Almost as if being spoken by a voice over at the end of a movie, a fairy tale even, where I ride off into the sunset blessed to know that I too, was once young and happy and most of all, healthy.

Thursday, October 14, 2010

I was admitted on Monday to the hospital. That was also the first scheduled day of my evaluation. Evaluation had to be canceled since I was sick and really needed a round of antibiotics. However they are able to perform many if not all of the tests for evaluation while I am in the hospital. That really gives me a sense of comfort. I like the idea of being in a familiar setting with my nurses and doctors while I have some of these procedures performed. Yesterday was the first invasive procedure I have had, a heart cath, it was not exactly a walk in the park.

The day went all wrong straight from the beginning. I had been placed NPO at midnight which basically means I can't have anything to eat or drink. I was told the procedure would take place around 7 am. However 7 came and 7 went, no sign of anyone. So around 10 am my nurse tells me that the test is going to take place around noon. Guess what?? Noon came and noon went, again no one comes for me. By this point I was beginning to become weak. The antibiotics take such a toll on my body and it doesn't take much for me to feel really lousy. I usually snack on fresh fruit through out the day and drink tons of water. I never realized how much my sick body depends on those things until I could no longer have them. Several other things occurred as well that I am not going to discuss here, but to say I was upset is an understatement. Finally at 3:00 pm they showed to pick me up.

They took me down to the cardio/vascular holding area and hooked me up to several monitors. I basically just sat there while they entered all of my information into the computer. Around 5:00 the doctor who would be performing the procedure came to see me. He was a short man with thick lens glasses that framed his eyes. He was a bit quirky and sounded like the character Napoleon Dynamite when he spoke. I asked him exactly what the procedure entailed. He began explaining to me that I was not having the normal heart cath that most patients have to check for blockage, rather a right heart cath to measure the pressure in my lungs. He wanted to go in my neck instead of my groin area however my port is placed in the exact location he was hoping to use. So he looked at the other side of my neck, hoping to use it and continued explaining to me what would take place. He said he would snake the catheter into a large vein next to my artery and wind it around my lungs and back up to my heart. Then he would go through a series of methods that would help determine exactly how much pressure I was holding inside my heart. I was completely calm and peaceful during the beginning of his explanation, because I was previously informed it would be going to my heart. I was actually even a bit relieved to discover he was NOT going into my main artery like I had been told upstairs. So all of this sounded like good news to me. However, when he mentioned snaking it through the blood vessels in my lungs, I began to panic. That was information I had not been given, therefore not allowed to process ahead of time. The tears came instantly. I knew my lungs are very fragile because of the steady decline I have experienced with my health over this past year. The first thing that came to mind was collapsing a lung. So I asked and did not get the answer I was hoping for. He said yes there were risks of not only collapsing the lung but also puncturing it. My mind began to swirl and I instantly became dizzy. I am not sure if it was because of the information I was being given, the fact I had not eaten in almost 24 hours or a combination of both. Regardless, I was at a breaking point. I thought I was going to scream. He tried to talk to me calmly and quickly realized I could not calm down. He said I would have no more than 15 minutes to decide if I wanted to continue or reschedule. Several verses came to mind while all of this was happening, first "Cast all your anxieties on Him", and "God did not give me a spirit of fear, but of peace and a sound mind". I just kept repeating these over in my head as I concentrated on breathing and thinking of the benefit of this test. It would get me one step closer to a life free of tubes. Tubes. Tubes for treatments, tubes for medications, tubes for oxygen. They are everywhere and I despise them. God did not create me to be tied down. The more I thought about how much I wanted to throw away every tube in my house, never drag an iv pole down the hall, or an O2 tank to the grocery store again, the more determined I became to do whatever it takes to get the life I dream of having.

So, I wiped my eyes with a tissue, swept my hair out of my face, sat up a bit taller than before, and said, "Let's get this done." With that the doctor handed my chart to the nurse and the next thing I know I am being wheeled into the operating room. So many thoughts were racing through my mind. I began imagining what it is going to feel like one day to be rolled into an even bigger operating room, knowing my disease is going to be cut from my body. Knowing that somewhere a stranger is going to give me a gift so precious that I can not even fathom. It was so overwhelming.

The room was a standard procedure room. Not too big, not too small. I crawled over onto the long steel table and the doctor and his team entered a small room next to the room we were in. I am not sure if they were getting dressed or just discussing how crazy they thought I was, ha, but either way I know they were out of the room for no more than a minute or two. I am such an observer and I immediately began looking around the room, trying to see if I could guess what instruments would be used and what their purpose might be. My fear was beginning to fade. And even though the room was silent, it was loud, as if there were an entire congregation of people in there with me, all wearing watches that were simultaneously beeping. =) I knew as I felt myself melt into the cold metal of the table while I took deep breaths of oxygen through the tube against my nose that simply, God was with me. He was there, in that moment, in that room.

The whole procedure lasted about 30 minutes, 15 minutes of that being prep time. We did decide to enter through the groin area. The doctor said there was about a 0% chance of collapsing a lung that way. I didn't feel anything other than maybe some small flutters around the spot he entered. I got three numbing shots and literally could not feel half way down my thigh, so he did a really great job to make sure I was comfortable. I did ask a lot of questions. I wanted to know what tools were used for what. Not out of anxiety but rather curiosity. I do find it all fascinating. The human body never fails to impress me. When you begin to learn about it, you realize there is absolutely no way we evolved, but were rather created. It is just so amazing the way it all works together. You realize God truly does have a plan for it all.

Love you guys!!!

P.S. My results came back and I have MILD pressure in my heart, even more mild than what they originally thought. They said it was no more than what would be expected with someone with Cystic Fibrosis! So that is great news!!! =)

Friday, September 24, 2010

Well the bad news is I have neglected this blog, however the good news is I have NOT neglected anything else in the process. Since the start of all the transplant hassle I have been focusing more on my family, friends, remaining healthy as possible and well just living in general. So I have not been able to spend as much time writing as I would like, but this was a choice I made. It wasn't like I let the time slip away from me. Actually it is the right opposite. I have grabbed on to time with both hands and am refusing to let go. So anyway with all of that being said I guess I need to give an update!

As most of you know by now I had my first transplant clinic appointment. This was basically a "meet and greet". We chose to stay in a hotel over night for this visit since we had to be at the clinic by 7:30 that morning. I had received my schedule by mail the prior week. So I was pretty informed as to what my visit was going to be like. So at 7:30 I had to be at the lab. My mom met us there since she didn't want to stay at the hotel. They were super nice. I have had labs drawn there before but it has been several years. I am a really hard stick and I had been drowning myself in water since around 5 am when I woke up and also the few days prior. I wanted to be really good and hydrated. I was explaining to the lab tech how hard of a stick I am when she told me to calm down and quit being wild. Ha Ha It was funny. Sam and I both looked at each other and laughed. So she stuck me once and got the blood! So happy about that! That was what I was worried about the most! I didn't want to be stuck a lot and be late for my next appointment. I was so thrilled I nearly jumped out of my chair! The only labs they needed were basic ones, like they would take during a hospital admission, so it was pretty simple.
Then I had to be at xray at 8:00. Xray is so easy but soooo annoying. I know I am complaining over something little but seriously I HATE having to get undressed just for a thirty second procedure. I was also having to wrestle with my O2 tubing. We had my travel tanks that day which made it fairly easy. I was surprised at how easy I could walk around with no help at all. But I was VERY tired by the end of my final appointment.
Next, was my PFTs. I mean that test does not even phase me anymore. Since me and my doctor talked about transplant and it is here now and happening, those numbers mean nothing to me. Don't get me wrong, I don't want to see them drop any but the anxiety that use to come with that test is GONE! I actually laughed when my numbers came on the screen. I blew three times as hard as I could and the tech asked if I wanted to try again. Sam and I laughed. I looked at her and said, "I am here for transplant clinic." No need to stress about them anymore. Of course I would love to have an FEV1 of about 70, ha even 40 would be nice, but these numbers no longer tie me down. There is a freedom in this for me. Of course I wish it wasn't time for transplant, but there is also this relief I feel. Like help is on the way almost.
Anyway, no time to be deep and significant, time for details now, deep can be later. Then we went to the actual appointment. It was scheduled for 9 that morning and I was right on time! I felt really great about that. I wanted to really show the doctors I could pull my own weight and am responsible. Being on time is everything. I felt like I was walking into the most important job interview ever. Ha. So I get there and everyone, I mean EVERYONE was extremely nice!! They were so upbeat and positive, not at all what I was expecting it to be like. I just assumed it would be almost like a funeral, but it wasn't! They are not in the death business, although it does happen from time to time, they are in the giving life business. When I walked back to the room they were putting me in, there was this old man in a wheelchair with O2 and a mask on (to protect from germs) just like me. When I walked past him, his eyes opened wide, he pointed at me and looked at his wife and said, "She's just a baby." Oh man, that nearly broke my heart. I was doing so well. But when he said that I felt my heart twitch a little for sure. I just wanted to tell him that I was strong and I was going to be alright. It was just so sweet, it was like he was concerned for me. You don't meet strangers who are concerned for you anymore, it is a rare happening. It was really great. It meant a lot to me.
First a doctor came in, he wasn't a student I don't think, but he wasn't exactly on the transplant team either. His name was Jason and he was really nice. He asked a lot of questions. When he went out of the room I began to stick my head outside into the hallway and noticed the two doctors I am familiar with that take care of me in the CF clinic and who are also on the transplant team were no where to be seen. I did begin to panic a little. I asked a nurse who was walking by where they were. She informed me they were not there that day. I was a little disappointed. I had hoped seeing familiar faces would make it not so scary. However once the transplant doctor who was there came in and introduced himself I was comfortable instantly. He was very personal and had a great "bedside manner". He laughed a little which eased up the mood for sure. He basically just said I did need the evaluation. He asked me if I had any questions. Of course the one question I instantly asked was about the heart cath. I am nervous about it. He was so honest with me, and he has no idea how much I appreciate that! He didn't make it out to be a bad situation, but did warn of the risks as well. I felt really confident after talking to him about it. I mean the way I look at it is if I can't make it through a heart cath, then I really can't make it through a transplant. So there is no reason to worry about it. It is just part of the evaluation and it has to be done. I brought in a three ring binder with ALL of my medical records I have been collecting over the years. They are even organized under tabs. Ha. I had a fresh new tab for transplant. I was so proud of myself. I really wanted to show that I am worth this. This is a huge shot, a chance these guys will be giving me. They have to trust that I am willing to do my part and take care of these new lungs once I get them. I want to prove to them I can be trusted, that I will literally guard them with my life, and never take it for granted. Maybe it appeared that way. I hope so.
Then I met with a transplant coordinator, not mine because she was busy but a different one. They will be giving me visits from now on when I am in the hospital, not for my care but rather social visits, which is so awesome!! I am really excited about my new team caring enough to come around when they don't have to. So that was that. We left around 10:00. Really short and to the point. They did say I needed a letter from my dentist saying I have good oral health as well as my gynecologist. Fun stuff. The greatest part is I didn't break down, not even once. I wasn't a babbling idiot like I thought I would be. My doctor put me on anxiety meds when I came home from the hospital and after about a week I ditched them. I was really starting to wonder if that was the best thing to do but you know, I have been praying intensely and it is like it is gone. Whatever "it" was that was causing me to worry all the time has left. I have a peace that is hovering around me. Sam can feel it too. God has this taken care of. I am actually kind of excited. Not saying I am completely fearless now, because I am not. I am still human, and I still have moments when my daughter hugs me and I don't want to let go, or my husband is telling me bye and I can't quit saying I love you. But you know it's a gift. I met with my pastor about two weeks ago because I was so depressed and about to lose my mind. He told me this was a gift. How lucky am I that I get a chance to get everything in order? To call long lost friends? To make amends? To heal relationships? Some people die instantly, never knowing it is coming and they don't get the chance to write their daughter letters for the future and tell those around them how much they mean to them. I do, I get that chance. Another point my pastor helped with were the WHAT IFS. There are so many of them. He said from now on, answer them, then they will go away. So I did. I started answering the, What if I don't make it? What if the lungs don't work? What if, what if what if. Once I answered them, that was it. It took the fear away.

So today I am at peace. My evaluation is scheduled on Oct 11, 12, 13 and the 19th and 20th. My heart cath will be done on the 13th and my TB test results that day. That is it for the 13th. They scheduled the cath on a day by itself for me. That made me feel a lot better. I just know I am not going to feel like running around afterward.

Please be praying for me, for us, for this whole situation. Now I have to go pick up my purpose, she just got out of school! Love you all!!

Friday, August 20, 2010

I have been trying to decide the best way for me to write this post for several days now. The truth is there is no easy way to tell any of you this. I figured by now I would be pouring myself into this blog, documenting every single emotion, telling all how I feel, but honestly, I am not sure how I feel just yet. So I am going to write this the best I can. As a writer I wish there were some great imaginative words for this part. But there isn't. You are my audience. You guys have been so loyal to me. So I am going to be honest with you. Sometimes honesty isn't pretty. Sometimes it is raw, real and ugly. That is how today's post is going to be. I can't stress about my sentence structure this time. My mind is too chaotic to even try to make it something great. Who knows? Maybe it will be great simply because it is real. Regardless, here is my update.

On the evening of Tuesday, August 10th, 2010 roughly around 7 pm I had a visit from my doctor who delivered news that will forever change my life. I am nearing the end stages of my disease. What does that mean exactly??? For me it means, Cystic Fibrosis has taken up residency inside my natural born lungs and despite my best efforts refuses to improve nor leave.

I have lived for about the past five years with my numbers in a critical state, with the fear of this new news lingering over my head. I have managed through a lot of blood, sweat and tears to maintain my disease, stabilize it, and keep my numbers hovering just well enough to dodge my new reality.

I do not feel defeated nor ashamed of my fight. I know I have put forth 200% of what has been asked of me. I have lived well and I have lived happy. However in the past six months my health has taken a horrible decline. CF has proven once again the monster it truly is. I am going to soon be faced with decisions that literally make me shake uncontrollably all over just to even think about them. However, I know GOD'S TIMING IS PERFECT!!!! His plan for me is WITHOUT flaws!

Not only have my numbers declined to around 25% now, but my quality of life is no longer what it once was. It terrifies me to see how quickly CF can step in and destroy everything in its path. In these short six months, I have went from working out at the gym two hours a day, running daily errands and simply just living to barely being able to walk from my bed to my kitchen, depending on oxygen certain times through out the day and planning my daily activities around how much energy I may or may not have. Some days I find myself in denial of it all. I have good days when I require no oxygen, and am able to do daily activities. However then I walk up a flight of stairs and it knocks me flat on my back and my reality sets in. My mind begins racing and I wonder how did I get here? This was not supposed to happen to me. I was going to be different. I was going to beat this thing.

The great news is I still can. The fight is not over, yet it has only just began for me. I have a chance to take back everything Cystic Fibrosis has ever robbed from me. I can have a double lung transplant.

While a transplant is trading one set of problems for another, it will enable me to become the person I have always wanted to be. I will be able to run, climb stairs and even climb mountains if I want to! With nothing slowing me down!! This will be my second chance at a life I have never truly had a chance to live!!

My team feel as if I am ready for the evaluation. For five years now I have been holding them off, however my body is telling me now is the time. I may not be listed right away because they still believe I may be a bit premature with my health. They feel I still have some time with my natural lungs yet. However results of a heart test in the hospital revealed I now have mild Pulmonary Hypertension. What is happening is the pressure is building up in my heart because my lungs are working so hard to breathe. This explains my shortness of breath and need for the O2. The doctor is not concerned but feels this is a sure sign of progression of my disease.

Their main concern right now is if I were to get sick (suddenly) this upcoming winter (as in flu, etc.) and need new lungs right away. If I have not been evaluated then I can not be listed, so for extra precautionary reasons we are going ahead with the evaluation. However, my doctor did mention if for some reason I had the evaluation done and we realize I am much sicker than what we originally thought then I could be listed right away. So there is a lot of unknowns until I go to meet the transplant team. He did say that he imagines, sick this winter or not, I would be listed within the next 6 months to a year, possibly two years, depending on if my health stables off where it is now, or continues to decline.

My first step is to meet with my transplant team. That will happen this month. Then my actual evaluation will be done in September. It will consist of roughly four days that I will have to stay in a hotel in Birmingham and will have numerous tests ran each day. In short, I am not looking forward to it! I hate nothing more than being touched, poked and prodded on. You would think after all these years, it would be a walk in the park for me, but no. I don't like it now just as much as I didn't like it 15 years ago. I have never become use to being sick. It has always felt foreign to me.

Oh and side note for all my nurse friends who may be reading this I would like to add::::You knowthose beautiful veins I have across my wrist, the ones I fight you guys for every time you do blood work. The ones I always insist I am saving for a rainy day??? Well guess what!?! I looked outside and it's pouring! This is just the situation I have been hoarding them for! So I am praying the lab work, because I know there is a ton of it that has to be taken during evaluation, will go a bit smoother since they will be able to use my really good veins. So I guess being stubborn will pay off somewhat. =)

So now what??? I am not really sure. I am new at this. I am still comprehending it all. I have some days
where I have peace about it, while others I cry for no reason at all, and at the oddest times. I can tell you this, my daughter has never looked as beautiful as she does now, my husband has never smelled as sweet and food has never tasted as good! I tell everyone I love them to the point I know they think I am crazy. Not because I think I am dying, but rather because I know we should say it more often, simply smother ourselves with the ones we love, for all we have in this life is each other.

The most important variable in all of this is GOD. He has His hand all over this. I know when He created my donor's lungs He knew one day they would find a home inside my chest, so He made them perfect, not only for the life they would live with my donor, but also for the life they would GIVE to me!

A lot of things I still can't wrap my mind around. Like what it will feel like carrying a pager, waiting for it to go off to let me know my new lungs are ready. Or my donor, who I am already deeply saddened to know the life they will lose so I can gain mine. Or how about the mind blowing fact that I will lay on an operating table while my disease is pulled from my body once and for all and replaced with the sweet miracle of life. I have been blessed to only have CF destroy my lungs. I have never had the additional problems other CF patients have. Recently a finding of my genotypes gave us a better understanding as to why I was born with it only in my lungs. So for me I will no longer have Cystic Fibrosis. That sentence is powerful.

It is all so overwhelming and I know there will be good days and bad days. My doctor has warned me that I will be much sicker than even this when my new lungs come. I simply can't imagine declining any further, but I suppose that is the way it happens. I do have dark times ahead of me but I am clinging to my Savior and I trust He will lead me into victory and glory for His name.

Everyone keeps asking what can they do for me now?? You may find yourself even as you read this asking yourself the same question. The truth is as far as this disease goes, this walk is between God and I. No one can take this from me, no one can make it better, no one can roll into the operating room for me. I have to do it. God will be and is with me. That I am certain of. So I will not be alone. What you CAN do are two things:::::: First, PRAY PRAY PRAY!!!!! Pray over me, pray over my family, pray over my doctors, pray over my donor and pray over my donor's family as well. I believe in prayer.

The second one is simple, just love me. Love me and let me love you. There is no medicine that can heal like love and right now I need not only to receive it but to give it as well.

As of now, I believe today is good, and tomorrow will be better. The battle will rage on and once again I will drop to my knees in deepest appreciation to my God that I am still here, breathing and living, one day at a time. That I too, get another day, another hour, another moment, another breath........

and simply........another chance.

Peace and Love, always Peace and Love.
I love each and every one of you forever.

"Even when life is bad, I can't complain because even then......I am still breathing."
-Summer Welch

Thursday, August 12, 2010

Have you ever seen the childrens movie Coraline? Do you remember the part where as she walks deeper into the magical world it slowly starts to unravel? That is what happened to me today. As I entered my Starbucks, located here in the hospital, I had an instant feeling something was amiss. It no longer appeared to me as a safe haven that I can escape to when being sick becomes too real. The lights didn't glow like embers, the people didn't seem as warm, and the big purple arm chair sat rather lumpy. As I sat there I realized it was only an overpriced coffee shop in a hospital. It no longer brought fond memories of home. It was sterile, it was ugly, it was simply just another part of this building. I am not sure why I felt this way. It was a bit overcrowded today. I did feel uneasy sitting around so many people. After all I have been here 24 days today, that is almost a month. A whole month that I have had limited human contact. But all the same the visit just did not sit well with me. I noticed nearly everyone had some sort of technical device that they were tied to. Whether it be sitting in front of them, or clenched in their hand as they talked to a dear friend or colleague.

One couple sat at a table for two. They were in their late forties, married, and not once spoke to each other. He sat carefully turning the pages of his newspaper as she starred blankly into her laptop. Everyone was so disconnected. I suddenly realized I don't want to be that way. I don't want the keys on my keyboard to be more familiar than my husbands hands. I don't want the glow of my screen to be warmer than my daughter's smile. I want to live. I want to experience life. Everything here is so sterile. I am afraid I have been here too long. Tomorrow I get to return to my home, my safe haven, my family, my friends, my church and my life. I will be returning not the way I came. I am different now. I am no longer disconnected. I have a burning desire to chase after my God with every part of my being. I only thought I knew what that was before now.....but I didn't.

My hope is in returning home I will be able to let my mind comprehend what my body is doing. As well as let my body comprehend what my spirit is doing and what my God has plans to do. Things are big right now. Everything is big. This is life and it is real. This is not someone else's story. It is mine. My story that will not be left untold. God is the author and I will spend each day patiently waiting with passion to turn the page to the next chapter. I know I am not, but as I sit here and weep with overwhelming emotion I say, I know the great I Am.

About Me

God has given me incredible strength. When I think I am finally finished, He proves me different. I am in short, a walking miracle. I believe we all should let our lives speak, for we all have beautiful stories that are left untold. This is my story, my life...I hope it speaks to you. -Summer-